I'm back....at least for the moment :)

 Wow hard to believe that it has been over two years since my last post.   I think I must have been just over this whole journey.  Now it is 2021 and we are in the middle of a pandemic.    The past year has reminded me often of my first year with cancer, and the treatment time.   I remember back then that when I returned to the outside world, which by the way wasn't this long a time, so many things had changed.   There were new businesses open, old businesses closed, new people living around me, old friends had moved.   I guess having cancer and the following treatments is like experiencing your own personal pandemic.   Who knew that !!!!!!

Not sure whether I will continue to blog but had a strange urge this morning to check things out.   The past couple of years have seen good times and bad, although not one of the bad has been a return to cancer.  This is the longest period of time I have been cancer free in twenty years.    I will have been on this journey for 20 years on June 27th , and this particular part of the journey since January 19th 2014.

In the beginning I likened my cancer diagnoses to my own personal 9/11, which was also 20 years ago albeit not until September.   So mine was first as if that really matters.    Now I can compare my treatment times to a pandemic.   Interesting how the larger life often is just a reflection of the personal life we live.   We here in the 1st World don't notice that as often as we are usually an arms distance from real world tragedies and then when they hit be all go crazy.    I know in many ways this time has been hard on people, especially for mental health reasons, but doesn't it make you wonder if perhaps our mental health is so precarious because of the lack of real life experiences.    I mean, there is a large portion of the world that live an existence that is day to day and for some reason they seem to be much more equipped to handle it.   I wonder if the brain, like muscles, needs to be worked in order to deal with a difficult life.

I have had cancer for 20 years, but before that I had a terrible marriage which I survived, I had a spinal cord injury that I was able to come back from despite all the odds, and I was a single mother who worked full time and raised an amazing child.   Maybe I have a more resilient brain because of these other traumas in my life.    If so then it is true that what doesn't kill you makes you stronger.

So, to all out there just trying to muddle through whatever life is throwing at you, remember if you can dig deep, keep your head above water, and never lose hope the life ahead of you will be a brighter stronger one than the one you leave behind.

Maybe I will start writing again, seems like I have lots to say :)

Still alive and kicking (sort of )

It has been so long (years actually) since I even felt like writing.   So much has changed and yet so much has remained the same.   I am still in my remission from my surgery in January 2015 - four years ago now.   I have learnt to live with the lack of use of my right leg, even though I still curse at its lose.   I no longer feel any great need to go into detail when people point to my brace and say "oh what happened".  Initially, people seemed surprised that someone as young as I would have joint problems but that seems to be getting less and less as I age.  I guess I am finally entering the senior scene and its more expected that knee and hips are deteriorating lol.     Now I just smile and say "ya I had surgery" and move along.   No time to go into ghastly details and no one really cares anyways.   I think it is just a conversation opener.

I have started doing weddings again and it is life giving.   The interesting thing is that the young couples I wed are so self absorbed they rarely if ever ask about my brace and cane.   Its sort of refreshing in a way :)

I am also now the grandmother of two beautiful children.   One girl and one boy.   Who would have thought so many years ago that I would obtain this lofty divine office.   It is the best of times in many ways .   Your own children don't quiet adore you in the same way your grandchildren do.  If I had the grandchildren first I might have had a dozen!

So as I said, some things change and some things stay the same.    Life continues in a myriad of ways both good and bad but waking up breathing every days gives me an opportunity to do one more thing or nothing at all.   My choice.

Maybe, I will continue to write .    We will see what tomorrow brings :))

Fund Raising Campaign

Just a brief update.....a fund raising campaign has been started to help me buy a used vehicle to modify so that perhaps I can become somewhat mobile again.  Since my surgery in January I have not been able to drive.    You can find the campaign information at the following link

gofundme.com    under   Elizabeth MacLeod - Modified Used Vehicle - Handicapped

Signing off for awhile.........

I have decided to back away from this blog for the time being.   It is harder and harder for me to write directly about my journey in this way...perhaps I have moved to a different place or I just need to do something different.

On that note I have started a second blog:   Cancer Diplomacy....this will be a topic specific blog which allows people to learn that interacting with a cancer patient/survivor (or someone else with an terminal illness) can be like trying to  walk through a mine-field.    One never knows exactly what to say and what not to say.......

Let me help you ......Cancer Diplomacy is 365 tips on how to have a healthy and positive relationship with someone who might hear you differently than you intended.....

Darkness.....a new definition

Darkness.  Perhaps the current understanding of darkness is untrue.   What if darkness is absolutely necessary for life as is lightness?    Why do we treat the darkness as a foreign state, as if it is not natural but rather the opposite of natural - unnatural?

Most of our thoughts or definitions of darkness come from someone else.   Depending on how comfortable your parents were with the darkness will definitely have an effect on your feelings toward darkness.   My daughter has always been very comfortable in the darkness.  Unlike myself, she has always closed her door at night.   She never really cared whether or not there was a 'night' light.  We never had a light on at night.   I enjoyed sitting outside at night looking at the stars.  Loved walking in the dark, partly because you can see inside the houses and see the decorations and colours etc .   Some people think that is 'peeping' but I figure if they didn't want you to look they would close the curtains or close the lights.   It was best in Germany because the houses are right beside the road and not far off with huge lawns in front.   For anyone who loves to camp the darkness is the best part.   Although that is when we light fires, sit around them and allow the dark to circle us.   Walking back to the trailer is so beautiful because the stars are so brilliant.....a light against the dark!

I digress.    I have always been very comfortable in the darkness. I have found myself sitting in the dark of night on the worst times in my life.   I have found myself walking the streets at night when I am stress or anxious.   I find the darkness like a blanket....safe and warm not frightening and dangerous.  I have even been very at ease with looking at the darkness that exists within me.   I know that we have two sides to us.    The one we are happy to show and the other we keep hidden.    We use the expression 'our darkside' because again we are inculturated to see anything in the dark as negative.  Our faith takes us there....the devil lives in the dark, God in the light.   Well the book I am presently reading debunks that understanding.....finally something that resonates with me and the dark.

In the Book of Exodus we find that Moses came face to face with God in the darkest part of the mountain.   Imagine that.   Hmmmm....God being found in the dark.   Not a light in the dark but in the dark.   So I don't have to find a light in myself before I can meet God in my own darkness.   For this time in my life I find this very encouraging.   I don't have to move out of the darkness before I can come to see and meet my God.    Perhaps while I am here I will try to look more closely for God, rather than trying to run from the dark.

Will keep you posted on how it goes.

tired and very very sad

I don't know if I can continue writing in the same way as I have been .   It seems that I have gone to a dark place and the lightness and humour that have been my solace  are no longer retrievable.   I am grieving !   I am saying goodbye to so much .   Until now I was able to accept the Cancer , never believing it was any kind of blessing, but accepting its presence.   I have never owned it, I have never allowed it to become me.   I have always looked at it from the outside , knowing it was there but not allowing it to enter my being.   It had my body but not my soul.

I find it harder now to view this disease from a distance .   I am tripping over it at every turn , literally as well as figuratively .

I am sick of the platitudes, the up lifting speeches. The ' there but for the grace of God' sayings and beliefs.    I am not grateful I am alive ... I deserve to be alive.    I am not grateful for what I have.... Physically I want more.   I want to walk, to drive, to have my life my independence back.   I am tired of having to be careful how I behave because some are uncomfortable with my sadness, my tears, my anger, my pity.   I am tired of having to be there for others comfort at the expense of my own.
I no longer have the energy nor the desire to make everyone feel ok around me.   I no longer want to be there for anyone.  I am tired, soulfully , spiritually exhausted.

I no longer feel hopeful... In many ways I feel I have tried to hard to live and now I am alive physically but dead on the inside .

I have chosen to be the way I was.... I thought that would help . Make me better.   Be positive, as if sadness would kill me.    Cancer doesn't care .... I realize that now.... It eats you one piece at a time and just leaves you to die .   I am so very  tired .

Darkness ....... an in between time

I don't know why I have been avoiding keeping up with my blog.  It isn't that I don't have tons of things to say.   My mind spins like a top most days with so many different feelings and emotions that  I am twisting myself into a pretzel.   I think about going on line and writing and then I find something less important to do.

Darkness!   What does that mean to us?    Is it an absence of light or is it a veil  that covers the light? Does it matter? I am not sure but learning to navigate the darkness is a difficult task.   You are never really sure if you are going in the right direction or if something is sitting in front of you just waiting to trip you up (lately even being in the light hasn't prevented me from tripping lol).  It's that feeling that no matter how gingerly you step forward there could still be an abyss that will suck you up .    The fear, the uncertainty, the need to trust is so strong that you almost want to just sit still and not move because somehow that seems so much more comfortable.    The word 'seems' is what is important.   It really isn't more comfortable, it is just less dangerous.

Darkness has been a big theme in my life lately, and rightfully so.    I can be sitting in the sunlight and still feel like I am in a dark room, or walking in the street in the dark and feel like it is the best place to be,  even brighter than the sun.   I think when there is light around one feels that one should match that feeling.   Yet even in the midst of glorious light, the darkness prevails.   That situation is much scarier than being in the actual dark and feeling like you belong.    Belonging, the one thing all human beings desire more than anything else.   That search to find where we belong, feel at home, know our minds.   That place where we are travelling to  the whole of our life, and yet never really arriving.   I don't know where I belong anymore!!!!   

Do I belong among the healthy?   Keeping up with all the activities and events as if nothing has changed?

Do I belong among the sick?   Giving up all past expectations and just existing within the limitations that I have been left with?

Do I belong somewhere in between?    Not sick enough to absent myself from daily living but not truly feeling the energy or the desire to participate in a limited way.

There is a really good book written by Arthur Frank (can never remember which is his first name so I had to look it up) called "At the will of the Body".   It is a great book for those who are sitting somewhere 'in between" .  Not healthy enough to return to their previous life, but not sick enough that society can accept them as they are.   He explains that the advance of medical technologies has been so fast that the societal advances and understanding has yet to catch up.  Not only in physical ways such as accessibility issues, but in emotional and psychological ways.   Many in our society have been able to put their diseases into 'remission' allowing them to live longer lives.   Society however doesn't quite get this status.   We want people to be either healthy or sick.....being ill yet still capable of some form of participation is not understood, its confusing, doesn't fit into the categories which we have set up for people.

This lack of understanding on the part of our community, and society on the whole, is what often makes the darkness a safer place to be.   Sitting in the darkness, fearing the future is a more acceptable and more convenient place for the 'able' bodied. They sense we belong there.  They can understand, they can help when convenient, but they don't have to examine their own ways of being in the world and wonder if that is truly how it should be.   It is funny to see what an 'able' bodied person considers accessible.   If there is a ramp then its good.  Never mind that the ramp has been installed at such an angle that travelling it is like skiing down a slop or climbing a steep hill.    Accessibility is covered if there is an elevator , never mind that you have to go up or down to the floor that it is at to access it.    I am laughing as I write this because these have been my personal experiences lately.   My sense of humour has been a blessing because I can see the people who are trying really hard to be helpful realizing the absurdity of it all!!!!! LMAO.    That in itself has tempered my new experiences.

I have managed to try really hard to be grateful for my life...and I am in many ways.   But to be reminded on a constant basis about how lucky I am to be alive is really starting to take its toll.   Don't get me wrong, I am happy to be alive.   I enjoy my daughter and my granddaughter on a regular basis.  I recently travelled to see my sister and had the best time I have had in years.   There are many wonderful things going on in my life but there are also many things going wrong.   So to be told by people who are uncomfortable with my situation to focus on the good stuff is getting really tiring.   Sometimes I just want to sit back and say 'life sucks'.   Because you see in many ways it does.   But then again so does everyone's life at some point.   Why is it ok for some to complain and rant, but for others it is not.   It really comes down to whether or not the rant is fixable.    If it is, then we are all ok with it.   If not, then we don't really want to hear how awful things are.   Ultimately it is whether we are comfortable with the reality of what is in front of us.    Maybe it is all my own projection too.   Perhaps the lens I am looking through is shaded (or jaded) and the feelings I have toward the outside world are really the feelings I have for the inside but am too frightened to accept.

As I write, I am realizing why I haven't written lol.     I tend to become too philosophical and introspective and obviously need to gain the strength to do it.    Well, now I have much to think about and so I will probably go and do something less important......hmmmmm  I think I have a knitting project that needs my attention.

Just take a cab.....

I just realized that is has been almost a month since I last wrote anything.  Normally, that would tell me that I have probably been too busy to bother but I don't think there is a normal anymore.  I guess I have just been trying to find a new equilibrium in my life.   It's a slow process but I do have faith it will come!

What I have learnt lately is how many older people must feel as their body deteriorates yet their mind remains sharp.   I often think of my Mom.   After my Dad died she was often unable to get out and about as much especially after she moved to Halifax.   We, meaning her children, would say " just take a cab or ask someone ". Making the solution sound so simple.    It was the lack of independence that was the problem I realize now, not the lack of solutions !

I have many people I can call.   My daughter has performed Yeoman service of late.  I am not house bound for lack of solutions but rather because now I am dependent on others goodwill, schedules, and  various other things.   The day of spontaneous decisions on running to the store, visiting someone, going to the dog park are over.     Even making plans to go to the trailer must be done days in advance in order that rides are organized .   It is not that I have no one to help..... It is the fact that I constantly need that help to live an active life.   Which brings me back to my Mom.    I acutely know how she felt.   Sometimes it is easier to just stay home than admit how dependent you are.    Then there is the feeling of not wanting to be a " bother".    It is not that I think that is how people think.   It is just how I feel sometimes .    Wish Mom was here so I could apologize for all those times I just dismissed her loneliness as her own making.    I realize now exactly how she felt !

So I have learnt an important lesson and hope I can share it.   People do not want to sit home or avoid going places.   It's just sometimes it takes too much energy to arrange, seems like a bother to others, or intensifies the reality of the loss of independence.    No one has to solve these problems all the time .   Sometimes all that is needed is to acknowledge the feelings and to let them know they are loved and important enough to be helped .

Mom, to you I wish I had really understood ..... I do now as I am living it !

From Tears to Laughter :)

Some times my thoughts and feelings are dark and scary and writing is the only way I can put them out there honestly.  I have that sort of personality that makes me smile when I am with people.   Generally, I am truly happy and sometimes, rarely, I do it and hide my true feelings of the moment.   But the main thing is feelings are fleeting.   Often they are in the moment and then gone and the next feeling comes along.    We can make feelings continue by replaying the story in our heads but if left to their own devices they usually move along leaving room for another feeling to fill the void.

Yesterday was an especially difficult day but with the help of a wonderful daughter, a gorgeous granddaughter and friends that understand me, I made it through barely scathed and was able to start again today.   Now today was a little slow at getting to be better.......but sometimes the God of surprises has a very interesting way of waking up the funny side of life.   God can have the dark and ominous humour that I am familiar with and other times God allows the silly side of life to make you lighten up.

I decided to take a shower.   Not necessarily a fun idea with all that is now involved and so the decision to do this often takes awhile to percolate in my mind and then find its way into the body to get me moving.     So, off I trudge to the basement, down 17 stairs with my cane, organize everything with in reach, the towels, soap, shampoo and of course the lift for my leg.    Of course my menagerie of animals must also follow me into the bathroom.  So I am dodging and stepping, yelling "move" and "get out" as I arrange my stuff.

Then sitting down, taking the brace off, lifting the leg into the tub and closing the curtain.....or I must say attempting to close the curtain.    The reason for this is that I have a cat that is walking behind me on my shower chair and then along the tub and a dog who is pushing her head into the shower and knocking everything over.  Squidjet is just watching all this from a distance!  So, first I start to get frustrated and then decide to just spray them all.   Well, they loved it.   They thought this was a great game and Maize (the dog) kept coming back and sticking her nose in and trying to catch the water out of the wand, and Curia was batting the spray and Maize's nose having a grand time.    Well, then I could feel this laughter just start to gurgle up from deep within me and I too began to enjoy the fun.     Needless to say we were all soaked by the end, shower taken, hair washed and didn't even mind the extra effort involved.    An aside, I had to be really careful getting out and dressed because there was quite a mess on the outside of the shower too.   I know, I know, I have to be careful!   Lighten up and enjoy the visual!!!!!   

 

 

Curia (the cat) and Maize (the dog) BFF's

So I have gone from tears to laughter in the last 24 hours.    How amazing is that!    I guess living in the moment means the good and the bad, just as long as you recognize the good as much as you do the bad.    Imagine if I had decided that taking a shower was just too much work I would have missed all the laughter.    Many people thought Maize would be too much for me after surgery, including myself.   There were times when I thought "what was I thinking getting such a big dog".   Even thought I would have to give her up.   Well, she has been a blessing in my life during this time for many reasons, and one of them is the silliness a puppy brings into a household.    As I write this she is curled up on the day bed fast asleep from all the fun we had a little while ago.    The cats well they have tried to kill me many times going down the stairs but that cane has found its place enough that now they just 'get out of the way'.   So we have all found our space in this little apartment and today we all had a little bit of silly fun.

So God has taken me from the despair of yesterday to the hope of today.....for that I am truly thankful.    God has also shown me that the ups and downs of life have always been there just at this time they are more obvious.   Hopefully I will remember that the next time I am feeling blue.

Realities sinking in!

So, the sun is shining, the birds are singing and you can actually wander outside with a light coat, or  no coat at all.   It is the time of year we in the North look forward to all winter.   The time we can finally put all the woollies away and venture out into the beautiful welcoming weather.

I was looking forward to this too.   I didn't get the full weight of our winter as I spent the majority of it inside a hospital.   I heard the reports though on a daily basis of the bitter cold and the dumps of snow.   I did experience one of those days when they transferred me to St. Thomas....it was -20 or more and for me it felt refreshing after so long in hot dry artificial air. 

Unfortunately, it is not having the affect that I had expected.   I am not more joyous.   I am not excited about the warmth.  I am not happy that the world is waking up from winter and calling us all forth.    I am sad.   I am angry.   I am disappointed.   I am all kinds of negative things.   This weather is simply exaggerating all the things I can't do.   This weather is pointing out to me that I can't go for the walks I loved, I can't go for the drives I loved.   I can't even play with the dog in the field across from my place.   It makes me recognize my limitations.   I hate it.  I want to crawl into a ball and just go to sleep.  

I know I should be grateful.   I hate the word 'should' because it implies shame.   But that's how I feel.   I have survived a surgery and the ultimate purpose of it was successful but I am still sorry for myself.    I keep thinking that eventually I will get better.   Eventually, the limitations will go away and I will be strong and independent like I use to be.  Then, the reality of this is it!!!!    I have already essentially arrived at where I am suppose to be.   I may get stronger.   My endurance may get better but nothing is going to change.  

I so looked forward to the opening of my trailer at this time last year.   I couldn't wait to go out and sit on the deck and just be.   This year I don't even want to go out.   It again will only serve to show me how dependent I have become.   How incapable of doing the simple things out there that I loved to do.   I mean I loved cutting the grass, raking, walking to the store, gathering sticks for the fire.   I can't do any of those things now.   Even emptying the tanks is beyond my capabilities!

I am falling into a pit of my own making and I don't even want to crawl out.   The only time I feel any joy or happiness any more is when I am watching my granddaughter playing.   Then I am transported to a wonderful place and can for the moment forget all the other stuff.   Even though I can't get down on the ground, or chase after her I feel whole.   She seems to somehow intuitively know that Grandma needs her to come  and she does....with toys, arms open to be lifted and sits on my lap.   It is at those times that I feel like a complete being.

I guess I am still in the learning stage.   I have yet to move to the accepting stage........and it may take a very long time.   

Agonizing......

This is going to be a difficult post to write.   I am actually going against my natural grain and writing about an very agonizing moment.    Usually I like to keep those private so everyone thinks that I am doing well, being that 'warrior', really courageous and all those other positive adjectives people use when they see me. 

Yesterday, began very uplifting and fun, visiting  old neighbours who I hadn't seen in ages and introducing them to my granddaughter.    It was great, especially since they had known my daughter when she was just a child and so it was awesome for them to see the next generation.   One thing I found neat was she kept saying "she looks so familiar, but that is because she looks like you guys"....lol   It's true, if she ever got lost you could put a postage stamp on her and the mail person would know exactly who she belonged to.

Unfortunately my day did not continue in that vein.    I had an appointment with one of the surgeons...the bone man as my Mom would say.   I wanted to see him and hear what he had to say about the surgery and maybe answer a few 'bone' questions that I knew my oncologist wouldn't be able to.   Well, as in all teaching hospitals you have to meet the resident or student doctor first.   I am used to them not really have a full grasp on my case, especially since it is a very unique one, but I wish they would at least familiarize  themselves to some degree before coming in the room.   They never do and their questions  are very telling.   So in she comes and first question :  

Have you ever been here before....

Yes.

Have you met with Dr....    before? Then before I answer she looked at my brace and said....did you have that before the surgery...problem with your knee?

No, this is a result of the surgery.   My leg is paralyzed from the surgery. 

Goes to computer looks at information and then states....You wanted to know what type of cancer you have?    

Pardon?   

When you were operated on you didn't know what type of cancer?   Isn't that why you are here?

No, am I going to see Dr....?   and Yes I did know the type of cancer, I have had it for 14 years.

If you want to you can see him.........(why else would I have come?....my inside voice of course) 

Then the zinger:   Well the pathology shows no malignancy.   (totally bent over the computer not even looking at me)

WHAT!  (I go pale and almost pass out....but she doesn't know bc she isn't looking )

It says that the tissue samples they took....they took an awful lot too.....you had small bowel extraction too right?....well it says 'no malignancy '......(she turns to me smiling thinking she is giving me wonderful news and I am going to be so happy)

I am stunned and angry:   Are you saying that I have lost the use of my right leg and there was no cancer?    They put me through all this and now they are saying there was no cancer in the bone?  (should probably read that as all caps bc I am sure it wasn't said in a quiet voice )

At this point I have almost had an anxiety attack...seriously....my heart is pounding, my brow is sweating and my hands are shaking.    Have I really gone through this hell to find out that they were wrong.   You see, they are never a 100% sure till they go in and have the pathology done, so there is always that very small chance they were wrong.   I know that but it has never happened to me.   My whole world was starting to collapse around me.....I couldn't believe the physical reaction I was having to this news.

I said, are you sure you are not  reading the pathology of the margins they took and not the ones of the actual tumour?    I mean they removed the bone and nerves because of a tumor.....now it shows it wasn't cancerous.....are you sure?

She begins to back pedal and says "maybe we should talk to the doctor, this is not a very common situation and I am not sure what it may mean."    She then gets up rather quickly and goes to get the doctor. (the same one I was going to see 'only if I wanted to')  Meanwhile, I am literally shaking in my seat, even though I know at some level she is reading the report wrong.....it would be a nightmare if it is true.  Now, don't get me wrong, not having cancer is a GOOD thing, but having lost what I did is not the way I want to find out!

The doctor comes in and it is obvious she has told him her 'faux pas'.    He begins the conversation saying:   "negative malignancy is what I wanted to see....those were the samples within the margin that I worked....this is a good thing".  (Patting me on the shoulder and looking directly at me)     I deflated like a balloon and almost burst into tears.   He was aware and was very supportive and apologetic.   He is a very nice man!!!!   Needs to train his residents better though !  So, I am back to having cancer....all is normal again lol.

Then he told me about the surgery.   Although I had heard about it from my oncologist, the resident who assisted, the nurses on the floor, for some reason his account was the most difficult to receive.   I think is was his humility.   He said it was a very difficult surgery, and exhaustive.   He said it so sincerely and with such conviction it actually surprised me and I told him I thought it had been 'without surprises' meaning great.   He said that was because they had planned very well and had even planned that morning with the radiologist.   But, he said it was a long, very hard surgery especially for my oncologist.   He felt that his part was minor in comparison.   He said:  

My part was very small in comparison to the whole surgery... but
I think your surgeon was a little surprised when I arrived in the OR with my saw!    You see that is how we cut bone....with a motorized saw.   I think he was a little thrown off by that (and then he laughed).   Not a tool he is used to seeing in the OR....LOL "

I imagine he would be!

He then went on to say that my oncologist agonized over cutting the femoral nerve, knowing it would leave me paralyzed on the right.   He said it was very difficult for him to come to that decision even seeking his opinion on the matter....it was decided that they needed to get the best margins possible and that was only going to happen if they severed the nerve.    The tumour had grown right through the nerve.   The  point of the surgery was to give me the best possible chance and results.   Not always an easy call.    I understood my oncologist state of mind......

I have agonized over this consequence too!   Wondering if perhaps I had gone too far in trying to stay ahead of the cancer.   So when he used the word 'agonized' it resonated with me.   It also made me realize that I was not the only one dealing with this surgery at a visceral level.    It was a team effort all the way....from the beginning to the end....even the negative had affects beyond me.   I had people in my court who were as determined and with mixed emotions just as \I was.....I no longer felt alone in all this.

Now, I know how extensive and huge this surgery was.    I have spent the last few months trying to just get over it and move on.    I don't feel like that anymore.   I feel like I can actually take a step back and realize that I will be in the healing mode for some time and its ok.    My worth is not dependent upon how fast I can get back to some kind of normal.    I like to be able to overcome things quickly and move on......not this time.   I am going to rest a bit longer, be a little slower for awhile more, and not worry about  having to make huge leaps and bounds to prove I can overcome this particular adversity.   There is a freedom in that, but also a surrender.    I am not good at surrendering but I am determined to learn.   If the surgeons are still dealing with the surgery and its consequences who am I to look as if I have moved on.

This doctor looked at me with complete humility and said "it was a huge surgery Elizabeth, and it will take a very long time for you to get over it......if you actually ever will, your body has been changed forever because of it."

I think I needed to hear that and be given permission to NOT be a warrior, not strive to be the perfect patient, not be more than just human !

new Journey .... New way of being

It's been awhile but it's also been a difficult and trying time .  I am not good at writing when things are hard.   Maybe putting down in writing my sad feelings makes me more likely to have to face them.   I realize, this time, things may get better but not much is going to change .    I am grieving the loss of not only a limb but also a lifestyle..... Need to find a new equilibrium !

As someone who has found it easier to be solely independent ( not disappointed as much) it is hard to have to rely on others.   I have gotten better over the years but I always knew that it was a temporary situation .... A need for a limited time.    People are very good at being fully present for a period of time but as time goes on they tend to return to their own normal.  Take a death .. Everyone rallies around initially and holds the grieving person ... But eventually they disperse and the person who has most intimately experienced the death is often left to find their new way of being on  their own .  This is in no way a criticism , it is just that as humans we can only sustain our energy for so long and then must return to our daily life.  Although they feel for the person they are not as completely impacted in daily living by the loss .  

For myself this time ... I am permentately more dependent ... Not easy for a control freak:).  If I was rich I would just hire people and then I would be much more able to accept the help .   Not only would it benefit me but them as well.   Which brings me to another point.   How do I know that these people are not being benefited by helping me ? I don't for sure but down deep I know how I feel when I help others .   It makes me feel good , useful and more human.   So maybe the task I need to work on is believing that my friends and family really do want to help :).  Maybe I need to get out of the way atnd at least allow others to participate in my journey ..... At least for as long as they are able .   What a novel idea.     I am not great at accepting help but in many ways it is not a virtue ...  It's humbling to say the least and my pride often gets the best of me.

So,  my plan is to :  work on accepting my limitations ( ugh) ,  accept others help ,  ask for help,  and not feel I am imposing ..... I have been blessed with a multitude of amazing people in my life, including the most amazing daughter, perhaps it is time I appreciated where I Am At.... And stopped wishing I was somewhere else !

Will be more attentive to writing about this journey which is very different from all the others .   And just one more point..... I do appreciate  that they were successful in the surgery and that I am better in many ways .... But unfortunately that doesn't make this part any easier .... Two different things !

Walking, but in a new way !

March 19th, two months exactly to the day that I had my last surgery!

Hard to believe in many ways that it has been that long, but in other ways seems like such a short time.    In the past I would be almost back to normal....what ever that is, but not now.    There is no 'normal' to return to.....except a completely 'new normal'.   I am still trying to just get my energy back and learn how to get around.   This one was different.    The lasting effects are now visual, which means a whole new way of dealing with it.   Previous surgeries were solely inside and under garments so that I could get away with looking like nothing happened at least to those who I didn't know.

Not any more.   I now have a leg brace and a walker...definitely a noticeable change.    I don't think I realized how vain I was before.    Not too thrilled about this new appendature !    You see my cancer had travelled, or as the doctors like to say 'invaded', the bone.   This necessitated the removal of my Illiac crest, femoral nerve, and psoas muscle on my right leg.   For most these may not even be familiar but they are the essential parts of your upper thigh and pelvic bones that allow you to lift and move your leg forward.    I no longer have that ability and it is permanent.   So I walk with the aid of a brace and walker/cane.    As I write this, I feel like I am complaining and maybe I am.    I know that I will get used to this new way of moving and I will overcome it but I have to admit I think this may be the hardest time in my life.    I have actually wondered if I have taken this fight too far this time.  You see this was not really anticipated when discussing the possible consequences of the surgery.  It was believed that I would have minor nerve/muscle damage and a rebuilt hip....neither of which happened.   The tumour was more extensive and therefore there was more resection needed.   Had I known would I have gone through with it?       Then I am reminded of my beautiful daughter and granddaughter and realize there can never be a 'too far' as long as I get to enjoy them.

It doesn't mean that I don't resent this stage of my life.   It only means that I will overcome that resentment and learn to live in a new way.    Life is a journey of both good and bad, and the attitude we take to it determines how we deal with what comes our way.   I remember when I was the mother of a young child, no car, and having to take the bus in the freezing cold.   I never really thought about how hard and onerous that must have seemed to others watching, I just did what was necessary.  When I look back on that time I laugh at how naïve I was.  I  just did what I had to do, but it does seem like an awful lot of work!!!  So, in the same vein as that, I will again just do what I have to do and not think to much about it.   Maybe in a few years I will look back and be surprised but now I don't have the time to do that.

So, surgery is done.   For all intents and purposes it was successful.   So right now at this minute I am cancer free and healthier than I have been in a long time.   I no longer have the horrible pain I had before surgery and not only that but I missed the coldest winter on record.   As spring rounds the corner and the snow melts, I will begin my new life with a bit of a limp but still some spunk in my step.    Especially with Maize at my side.    

Humbled beyond belief...........

Sunday night and I am sitting just waiting.   It's like when you are going on a trip and you are waiting for the flight to leave.   I am one of those that always arrives way too early and then sits and anxiously waits for things to get moving.    Well, it's not much different now.   There is something to be said for the 'old' days where they made you go to the hospital the night before.   Then you were there, they gave you good sleeping pills and just rolled you out in the morning.   Now, don't get me wrong, the shaving thing was no fun and I am glad it has gone the same way as bloodletting, but at least I would be there and maybe even unconscious!!!!!

So, I sit and wait.   May even drink a coffee before midnight cause if I don't sleep tonight I will make up for it tomorrow....not like I need to have my wits about me :)

I have to say that among the various thoughts and feelings that I have been having over the past few days I am also feeling extremely humbled and overwhelmed (in a good way).    The people who have called, dropped in, send texts, e-mails, cards .....offered prayers, rosaries and Masses,  offered to look after pets and taken them  in has been incredible.   Never have I felt so tightly held by so many wonderful friends and family.    It is the most amazing feeling to know that to so many you are important.    If we could all feel this all the time what a wonderful world we would live in.    To be held up in prayer and good thoughts and so many offering best wishes and good luck......

It's so nice to know that I am loved!

I am anxious for tomorrow, I would be crazy not to be, but I am also very much at peace.    I feel that no matter what happens 'all will be well'.   There is no better place to be at a time like this.

To each and every person who has thought of me, prayed for me and offered help, food and support of every kind I thank you from the bottom of my heart and soul.    For my daughter to see this gives her incredible hope and peace as well.   You have blessed us in ways that you will never know, but you have changed me at my very being in ways that I cannot express.

Tomorrow is out of my hands.....but I know that I am in God's hands through the people in my life and that is a wonderful feeling......see you on the other side of surgery :)

Life outside......

So I have decided to write another post.   I feel like Cher on her farewell tour.....I think I saw her second or third one.....oh well we never know when we will actually say farewell.

So, the week has gotten somewhat better.   Have learnt to take pain meds on a regular basis if just to take the edge off the pain.    I hate meds especially because there are all the other side effects that go with them.  It seems that Tylenol3 is my medication of choice, and I am able to stay awake now that my body is becoming accustomed to it.    How my liver is doing is any one's guess?    Milk Thistle is the med I take to hopefully detoxify my liver.

So I am beginning to feel a bit better.   It is still a very difficult time, and the pain is exhausting.   I realized that through all of this journey I have not really suffered pain from the cancer.    It has most often been post surgery and chemotherapy.   It is very different when you realize that your body is hurting because some mutating cell is taking over a part of you.     It makes me think it is eating into the very fabric of my body and that the pain is my poor body trying its best to fight back.

Today, I had to go for more tests in order to get ready for surgery.   Saturday morning is not the day you want to be having tests done at a hospital.   The staff is very few and far between and lack of communication seems to be the standard.    All the staff were pleasant, but had I not been a bit pushy I would probably still be sitting on some 2nd floor wing waiting for the department to open.....Monday at 6:30 am.

I got a friend to drive so I wouldn't have to walk any great distance, but I ended up walking a marathon in the hospital.   I was sent to one desk, who then sent me upstairs to another reception area, which was closed.   I returned to the first floor to be told "well I don't know, I guess you will have to go back and wait till they open".....the sign on the door said Monday!!!!   I mentioned this and she said "no someone will be there cause you have an appointment"......I then informed her that there is no where to sit up there and I can't stand.   She agreed to let me sit in her area and she would doing some calling.   Well ten minutes later she comes and says...."You have to go to Emergency cause the charge nurse for that department is delayed and won't be in till 10:30 am....it was 7:00 am at this point.   Thank goodness I didn't go back upstairs!!!!   She informed me that she had spoken to Emerg and they would do the CScan.   Off I trudged down hallways, around corners through doors that said Staff Only....to the back of Emerg.    They had no idea what I was talking about....but they figured it out.   My fear was I was going to have to sit and wait in Emergency for the scan....the sign said 5-8 hour wait for non-life threatening issues.....don't thing a pre opt scan is life threatening.   Just a note:   the department was completely empty except for a young couple waiting to be seen.......????????

So had my scan and was on my way at 7:30am.     I was so grumpy mainly because I hadn't had coffee yet but also I was hurting and all that walking wasn't helping.  I figured that if it got any more confusing I was just going to tell them I had decided not to have the scan and leave.   What were they going to do CANCEL MY SURGERY !!!!   I think not......

So the crazy journey continues but there have been some bright lights this week too.   Friends dropping by for visits, to help walk the dog, bringing yummy food to keep me strong for surgery, and even a Reiki treatment that made the world of difference.     As horrible as I have felt all week, and I have felt awful, I still realize that I am a very blessed person.   From my granddaughter's smiling face when she comes in the door, to my daughter's helpfulness and cheerfulness, to friends that take time out of their busy day to call, text or visit I have many good things in my life.  

Life is about looking at the good stuff and just trying to work through the bad.     No matter how you look at it there will always be more good than bad, sometimes you just have to brush away the muck to see it.     Cancer sucks, but life is good.

So this may or may not be my last post prior to surgery.   I am feeling much better than I did on Tuesday and so if the urge grabs me I may write again.     Thanks to all for your support you will never know how much it means just to hear a hi, see a text or get an email......there is life outside these walls :)

Last post till post surgery!

I am writing this post Christmas. I had a great holiday and am grateful for that.  The past week has not been so good.     I have spend the past four years writing about my journey with cancer and feel in many ways I had no idea what I was talking about.    I have had times when I was not well or felt tired but never have I felt this much pain.    My cancer has taken over my every minute.   I can't read, knit, watch t.v. or anything.   How people live in this condition for long periods of time is far beyond my ability to imagine.    Bone pain must be the worst pain ......nothing seems to completely alleviate it.

I struggle each day just to try and find the middle ground between bearable pain and sleep.   A funny aside is that if you actually read the side effects and all the warnings on the pain meds you would wonder how anyone would even take them.    You can suffer from so many more life threatening ailments than the pain you are trying to alleviate....the pain seems the minor of the two.   

Then there are the other issues that ensue because of the medication, so you have to take medication to keep all the other bodily functions going.   

So, for now I will wait for surgery, and not attempt to write this blog anymore.   I feel that I have been naïve in what I believed to be a tough journey.   So, far I feel that I have been blessed with little pain and just fatigue.   I am now making up for it.

Please forgive me for stepping away from the world for the time being.    I am not able to tolerate much these days so I am staying close to home.    My daughter is being an angel and I don't know how I could go through this without her.    Prayers are needed if for nothing else but to allow me to sleep for the next week and a half.

Christmas miracles .....

So it's Christmas time!   Not really feeling it which isn't normal for me .   I love Christmas but this year it just seems to be overwhelming me.    I think the body can only handle so much whether it's good or bad .    I have been procrastinating doing anything and yet at the same time I know this is my first Christmas with my granddaughter ..... That is fun .... Just the energy levels,the pain, the stress of the surgery seems to press down like a weight .   I get up and think ok today I will decorate, or shop, or wrap then I sit down and it doesn't happen!!!!!!    Well the universe has conspired to make me move :)

God intervened through those around me:

A good friend helped me finish a special gift which started me looking forward to the season.    Then a friend gave me a very nice gift to share with my family .    So again, I am being directed towards the Christmas spirit.    Then I lost the gift :(.  I searched, retraced steps, prayed to St. Anthony (the patron saint of lost things) , then finally let it go ....  No point obsessing over it .... It's gone .    Two days later another friend comes to me and says "look what I found".  There in her hand is my lost gift.   The story of it coming into her hands is bizarre but suffice it to say ..... It was a miracle .... A Christmas miracle.    Then, a friend decides to visit and while here convinces me to haul out a few decorations, put up a small tree and VOILA..    I am inspired!     So Christmas will take place this year and I will participate ..... Sometimes you just need a little divine intervention through the love and kindness of friends .

I am still tired and overwhelmed about the future, but for the next little while I will live in the moment and enjoy the season ..... Count my blessings and find joy in what today has to offer.

I am a very blessed woman in so many ways :)

Lesson in Relativity......

I recently had a very good lesson in the 'theory of relativity'......It was very eye opening!

On November 5, I learned that my cancer had metastasized to the hip which was a surprise for everyone, doctors included, as it was not even on our radar.   To say I was devastated is an understatement.    I was more upset about this news than I had been about the first two diagnosis.....it felt like a death knell.   Then, on November 28th, I saw an ortho surgeon who explained to me that he could resect the hip bone and rebuild it but first he wanted a bone scan.   The purpose of the bone scan was to see if the cancer had travelled anywhere else in the skeletal system.   The reason this was necessary was that if it had, the surgery would not change the outcome.    Oh.....so now I feel even worse....omg this might just be the end of the journey as far as possible treatments.    For two weeks I waited under a cloud of very heavy and black foreboding.    It was awful.   I was told it might be a month before the bone scan.   How was I going to wait that long and then again for results?   One day later I got a call, bone scan was scheduled for December 3 and a return appointment for results on December 9....the irony is that made me even more nervous because they were moving so fast.    Even the doctors were worried....Yikes....poor medical system they can't win:)


So Tuesday December 9th I returned to the ortho doctor to get my results.    No spots seen anywhere else!!!!    Yippee it is ONLY in my hip!    What a change from November 5 when I thought that was the worst news.   Now it seemed to be the best news.     IT IS ALL RELATIVE!!!!!!!

So, there is cheering on the bus.....everyone is allowed to yell, scream, and laugh as loud as you like.
The news is good......only hip metastasis...who would have thought I would be cheering this news.

Now, we wait for surgery.    Not till early January so it will be a great Christmas.   I decided on the way home yesterday that I WILL put up a tree.....and hopefully my 'little' puppy won't take it down!

I am excited for the holidays and can feel the difference in my body of how the news changed my stress levels.   My daughter said that she physically saw me relax as the doctor gave me the news.  News that a few weeks earlier had made me stressed out now made me relax.    Life can be very funny sometimes.

It will be a tough surgery and after hearing all the gory details yesterday of how and what they will do, I did have a few bad moments last evening as I was drifting off to sleep.   All the risks and what ifs....but I pushed them aside and began to imagine the upcoming days of Christmas with my beautiful granddaughter and her amazing parents.   I am blessed in so many ways how can I not be joyful.

Life is not always what we want or expect....but sometimes we need to put it all in perspective and focus on the good stuff.   January will come and it will be tough, but for now I will take good drugs, feel happy and blessed, and enjoy the moment.......

My prayer for everyone is that what ever Christmas is this year.....find the nugget of joy in your lives and make it the focus of the season........remember God is with us.......during this season and forever!

Living "today".....

I wrote this sometime ago but felt it very much applied to what I have been trying to feel these past weeks.    It hasn't been easy but there is a truth in trying to live in this attitude.   It was good to be reminded that I have struggled before and overcome it, so perhaps this time will be similar.    If not then at least I haven't wasted today.

Originally posted in December 2010:

It is very good to take time and recognize the blessings that we have been given.  Even if it is only to be able to rise from our beds and walk to the kitchen.  Or put our coat and boots on and go for a walk in the evening mist.   Often these things seem so natural, that we forget that some no longer have that ability.  To take a simple walk, eat a good meal, or spend a few hours without any form of pain or discomfort, that alone is gift.   I know  that I have struggles ahead and perhaps even challenges that I don't want to face,  but today, I am fine.  Today, I can look after myself, participate in the daily grind of living without too much discomfort.   Today, I will enjoy the simple things in my life and not worry about what might come later on.  Today is all that really counts because in the end none of us is guaranteed tomorrow.   I will go with how I feel today and live that to the fullest.   Tomorrow will take care of itself, and yesterday is gone.   Thank you God for the gifts of today, and for the awareness to appreciate them and to use them to their full potential.   Bless all those who have less than myself, and may they find peace and some joy amidst their pain and suffering.   Bless those who minister to loved ones in their illness, may peace surround them during this difficult time.   And most of all allow all to rest and regenerate so that tomorrow may bring some form of hope for a future!

How to help someone journeying with cancer........

So five hours at the hospital can give even the most narcissistic person pause for reflection.   Yesterday was one of those days.   I rewound to a time that I had almost forgotten.    As we wandered the halls in between tests I made the mistake of going places that I probably shouldn't have.....one being the Surgery Ward....the body does not forget even if the mind pretends to.   Had to make a quick exit as I actually began to sweat and get dizzy.....way to raw for that place.     In addition, I found myself being very confused and realized that it was probably a good thing my daughter was with me or else I might still be wandering the halls looking for an exit.    We certainly had a few good laughs with my lack of directional ability and my moments of complete confusion as to what we were doing or where we were going.     It was comical but very revealing at the same time.

Going through this journey there have been very comfortable, calm times, and there have been very disturbing, chaotic times.     Unless you have been through a roller coaster ride like this I don't know if one would actually understand how it changes.     When no tests, doctor appointment etc are going on it seems like you can convince yourself all is 'normal' and go about your life quite balanced, parking the bus for future use.   As soon as the bus starts moving again all those old feelings of dread, fear, and chaos rear their ugly head.     My daughter is very familiar with this and so gives me great slack at these times.....not taking anything personal and knowing that something simply said can set off a storm in me.    Others may not be so aware!   So here are a few do's and don'ts one might put in their store of things you need to know when dealing with me specifically, but anyone undergoing a Cancer journey in general.

1.    We don't want to hear about other people's journeys, especially if they haven't survived!    It is not the time to have a conversation of comparisons between your friends and us.    We aren't in the space to deal with it and might actually hit you......

2.   We don't want to hear that everything will be OK.    Yes, it might be and God willing it will be....but it might not and that is part of the journey we desperately need to deal with.    It is hard for you to hear it but imagine how hard it is for us  to live it.

3.   We appreciate anything you might do for us.    A visit for tea, a casserole for the freezer, or just a phone call to say 'wanted to hear your voice'.     Don't just say 'call if you need anything' because we probably won't.   First, its hard to ask for help and secondly we don't always know what we really need.    Come by and offer to clean or bring a simple lunch.   Recently, someone did that for me and it was wonderful (awkward at first as she cleaned both my bathrooms) but after she left I felt so good and had the sparkling bathrooms to boot.

4.   Don't not call because you are afraid to bother us.    If we don't want to talk we won't answer and there is a good chance we do want to know that people are thinking of us......even if its just to say hi.

5.   Pray for us, send positive energy....let the universe and us know that you love us.    Nothing is more healing than knowing that people are thinking of you, praying for you and loving you.....the best part of a journey like this has been finding out how many people care and love me.    That is a blessing in any one's life but especially someone who is struggling with cancer......at least we know we will be missed if it doesn't go well and that can be very important.

Finally, don't worry if you feel awkward.....its normal we do too.    No one deals with illness well but it can be a very positive and uplifting moment for both of us.      It isn't about how YOU are feeling, sorry but for this time its all about me.      Not often we can say that, and hopefully most won't ever have to, but for now my focus is limited to about 3 feet in front of me.    My brain doesn't really grasp what's going on in my own life most of the time, let alone how the rest of the world is dealing with it.
So, be patient with me, love me from near or far, but if you need someone to talk to because you are feeling sad......I am sorry but for now I can't comfort you.....I only have enough energy for me and my family.......

God bless you and thank you for caring.....it means the world to me.